Cystic Fibrosis Forum (EXP)

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  1. B

    Confused about mixing Colistin

    They are supposed to send the medicine and little bottles of sterile water. Never seen NaCl.
  2. B

    Old folks: how did you do it?

    you sound a lot like me right now. i'm 25. hopefully i can make it in my 50s before i need a transplant. all the older males here with kids, i assume you didn't have kids the natural way?
  3. B

    Anyone go to the CF clinic at Johns Hopkins?

    i've been going there all my life and have always been treated well. i emailed the nurses last thursday because i wasn't feeling the best and they got me an appointment that tuesday. doing a PICC line this friday. they are always fast and make the time to see me. my next appointment is the day...
  4. B

    Pulmozyme

    i must be the only person here that does not do a vest. my doctor's haven't suggested one either.
  5. B

    coughing in public -take the quiz- he he he

    most people don't even care. sometimes at the gym i will cough and i see people look. usually ignore them.
  6. B

    Hemoptysis Right After Discharge

    happened to me last year. finished 2 weeks of IVs, coughed up a ton of blood. the second time it was so bad i called 911 and was flown to a hospital where i got an embolization.
  7. B

    Update!

    she probably won't have damage until later in life. i didn't until i was 20.
  8. B

    Anyone go to the CF clinic at Johns Hopkins?

    how is it nearly impossible to get an appointment? just call them and schedule one. i can usually get one in a week, and they always wanted to see me every 3 months. are you sure this was the CF clinic at hopkins? does not sound like them at all.
  9. B

    TOBI/TOBI Podhaler

    i stopped tobi a while ago and been on cayston ever since.
  10. B

    Siblings without CF

    yep, we lost a bad bet.
  11. B

    Best treatment center in us

    i go to john's hopkins. my doctor is boyle.
  12. B

    Are sports okay?

    is his liver enlarged?
  13. B

    They are putting my girlfriend on the transplant list

    sorry to hijack, but at what point do they put you on the list? a certain FEV1 %? also, when you are on the anti-rejection meds, do you get sick easily?
  14. B

    Kalydeco

    really hope there is something for f508 soon because that sounds incredible. i am at 41% FEV1 now and going to 70 would be fantastic. need to get in the gym more. i would also love to cough a lot less too.
  15. B

    Husband with CF, declining health,lungs functioning at less than 20%,what can be done

    be careful with MRSA, my brother died from it.
  16. B

    Being seen as gay?!

    i'm the same as you almost, and i'm 25. my voice is not deep at all, my friend calls it angelic, lol. hard for me to grow facial hair, and i have 'womenly' features. i have been tested for low testosterone though so i am thinking about taking shots to bump it up. i do stare at guys and girls...
  17. B

    lung function

    41%, 25 y/o. all the older people with better lung functions, what is your secret?
  18. B

    Career Path and CF?

    do you press mute when you cough? i had a job at a call center too. no one seemed to mind. i left to become a hardware engineer, but only because i have a degree.
  19. B

    New trial with Kalydeco and splicing/residual function mutations

    so this won't help anyone with double Df508?
  20. B

    Marathon: Is it healthy or not?

    what exercise do you do?
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